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Looking after Mary by Janet Bevan

A shortened version of this story was featured in the Summer 2019 issue of Caring magazine. Below you may find the full, unedited version of “Looking After Mary”, by Carers UK member Janet Bevan.

Looking After Mary

My father died in September 2010. We had all lived together in my house (my father, my mother and me). He died within a week of illness and was taken to hospital one Sunday with pains and diagnosed with double pneumonia. The doctors told me he would make a full recovery. I took his gardening books in for him to read. The following Sunday, I took his gardening books home as he had died that morning. No full recovery for him.

It left me, as an only child, to look after my mother; the umbilical cord had coiled around me like a python for all of my life, so it was my duty to look after her. Mary was 81 years old and suffered from Parkinson’s Disease. She had been diagnosed about four years previously. Lewy Body Dementia was also creeping into the picture, but at that time, not in a way that would harm anyone.

I had always had a tumultuous relationship with Mary and now I was in sole charge of her. She could still wash herself and dress herself, albeit slowly and I always assisted, and I used to bath her and wash her hair. She could still walk and could still help about the house, although housework had never been Mary’s forte. My father used to treat Mary like a princess so he did most of the household chores. Mary still liked to cook a bit. Although she used to make a mess in the kitchen. She loved making salads and would often make me one, ready for when I came home from work. I couldn’t help but notice that most of the salad ingredients had ended up on the kitchen floor. Most of all though, Mary still had a sense of humour and she could still laugh. Although her face used to have an almost painful expression when she laughed, governed by the constraints of Parkinson’s and its unflattering gift of stiff facial muscles.

I was single and in my late fifties and had a full-time job in London in a government department where I worked as a PA. My life changed considerably when my father died. I was unmarried, childless and up until then, really did just what I wanted. I liked to work in jobs which were not very demanding because they were basically just fuel for travel which I adored. I also loved wildly romantic relationships, which I always ended because Mr Right always ended up Mr Wrong in my eyes.

Mary and I slipped into a routine: she was happy with her dog, Meg. She enjoyed visits from friends and neighbours. She liked watching quiz shows and Jeremy Kyle and enjoyed scratch cards, the Daily Mirror and reading ladies’ magazines.

As the months progressed, I was becoming more and more stressed. I was having to get up even earlier in the morning to take Meg out before I went to work. I had no one else to help me. Mary’s condition was ever so slightly getting worse. She took Ropinirole, to help control her Parkinson’s as this helped with movement. She was slowing down but even more of a concern was the fact that she was experiencing visual and auditory hallucinations. The visual ones were of small black spiders crawling on the floor and over her body and the auditory ones was a man singing war melodies non-stop. Both of these, because Mary hated spiders and couldn’t stand hearing war songs non-stop, were very unpleasant for her.

I used to get good advice from the Parkinson’s organisation, Carers UK etc. In particular Bromley Carers helped me so much and I have nothing but praise for them.

At work, I was having difficulty getting in on time in the mornings but usually I was only a half hour late but it was frowned upon. Although I had a “carer’s passport” in place, it was of no use at this organisation. I asked for flexible working as a carer but was refused on the grounds that it was “detrimental” to the efficiency of the team if I wasn’t in the office on any occasion. So I struggled on, expecting the sack, not compassion, at any time.

Mary told me that she would be all right if I went away on holiday, as she had her “dog” to look after her. I felt guilty but then I always felt guilty when I was looking after Mary, so I paid someone to dog walk and then went away. I phoned Mary three times a day and she said she was okay but some evenings when I phoned, she sounded strange. It was the dementia getting worse but I didn’t realise that at the time.

Mary did get progressively worse, but they were things which happened over a long period. They weren’t things which happened straight away. When I returned from my holiday, the house was an absolute tip; nothing washed up and rubbish everywhere. Mary could no longer hold her head up. It appeared to drop on her chest. I found out later that it was called “dropped neck syndrome”.

I decided that Mary needed help on a daily basis – she couldn’t fend for herself much longer when I was not there. So I went down the Social Services route and Mary had a couple of ladies who helped with her lunch and tea while I was at work. Although later on when the disease really took its toll. Mary had about 14 carers per day.

Mary hated what her illness was doing to her. She had always been beautiful and fashionable and now she felt ugly. She didn’t really want to go out much now because of the neck problem. I researched the condition on the internet and found out that botulism injections might work. I took Mary to see her Parkinson’s consultant and she said that she would write a letter to a consultant at King’s College Hospital. Mary was jubilant and thought this might be the end of one of her many problems.

When the day of her appointment arrived, we drove in my little car to King’s. Mary navigated but we got lost and I vowed to buy a satnav.

Unfortunately, the appointment was not successful. The consultant was off sick and Mary saw his registrar instead. He said that Mary would not be suitable for botulism injections. It was only for people who had a different type of neck problem. Mary was devastated and cried on the way home. I was upset too. I only wanted the best for Mary.

I loved Mary so much, yet I disliked her as well. I felt that she was draining every bit of life out of my body. I was so tired at work and so tired at home. But never did I think of putting Mary in a care home – she meant so much to me. I always visualised life after Mary and I didn’t like it one bit.

Meg the dog was getting worse as well, she was diagnosed, would you believe, with canine dementia. Meg was beginning to mirror Mary. They developed a most magnificent strong bond and as their diseases progressed the bond only strengthened.

During the daytime of a New Year’s Eve, Social Services phoned me; the care agency who helped to look after Mary had accused Meg of attacking the care manager’s daughter who was a carer herself. Apparently, the care agency would now only come to see Mary if I was present. Obviously, this wasn’t practical as I had a full-time job. Also, Meg was physically unable to attack anyone. Her vet vouched for that.

Therefore, over the New Year’s period, I had to try and get Social Services to find another care agency. One was found, but unfortunately, they would not have anything to do with the care of Meg while I was at work and she was getting worse, she couldn’t walk very much and was doubly incontinent and her canine dementia progressed, mirroring that of Mary’s whose dementia was also getting worse. Fortunately, I managed to work from home a lot. I wasn’t honest with my employer, saying all sorts of things: waiting in for a delivery, going for a hospital appointment and looking after a neighbour’s children. They were all good excuses because looking after and elderly parent and an elderly dog were not good reasons. I was told a few times before by HR that working from home did not encompass caring for the elderly when they were ill. It always seemed unfair to me as people were allowed to stay at home and look after children when they were ill.

I was getting desperate, I knew it was time to say goodbye to Meg. Really, she was just a head left. The rest of her body was failing rapidly. But Mary wouldn’t have it. She wanted her dog forever. Like I wanted Mary forever.

I would come home from work nearly every evening and found that Meg had made a mess in the lounge… I was forever cleaning up and it used to get on top of me so much, I used to cry but Mary wasn’t sympathetic. All she wanted was to be with her dog.

In January 2015, enough was enough. Meg was put to sleep at home. It was done in a very loving and sympathetic way. I assisted the vet, and I think it was then that I finally became an adult. Mary held Meg and caressed her when she was gone. I couldn’t explain Mary’s grief: it was a distressing sight to witness.

Life with Mary carried on. She was deteriorating: she was trembling more, unsteady on her feet a lot and her stoop was getting worse. And her head was fixed firmly on her chest. She hated the state she was in. She wanted to be the vibrant, pretty lady of her youth. Instead she was an old hunched woman with a face that was beginning to look a bit like a mask. But often or not the beauty managed to break through. The magical, soft, wrinkle free skin and occasionally the slit eyes would open and the sparkling blue eyes would emerge. Always with the far away dreamy look. The carers, in general loved Mary and her looks and they adored her sense of humour. Mary was very fond of some of them as well. She loved to have favourites.

Looking after Mary took its toll on me though. I was getting fatter, eating cakes and other stodge plus I was drinking more alcohol - not an enormous amount, but I was drinking it. I was eventually diagnosed with pre-diabetes.

I felt like Alice, looking through the looking glass that was Mary, watching her decline. Sometimes it was fast, other times it crawled along. When Lewy Body did decide to take over Mary’s body for a few days for whatever reason, it never gave her back to me 100 per cent. A fraction of her being was taken away but she always did manage to bounce back in some form or other. Weak as it may have been.

I was made surplus at work and the team was split up, my boss hadn’t really taken an interest in the team, he was often off sick with minor ailments. But that was allowed. But my taking time off to care for an elderly person was always frowned upon. Although to be fair I had managed to negotiate, with difficulty, flexible working as a carer. So, I managed to get Mondays working from home. Which I was extremely grateful for. Plus, I had a good network of friends and being with them each day boosted my spirits. Which was good because I was getting by on only four hours sleep at night. Mary had me up numerous times in the night, for one thing, or another.

Fortunately, at my age, I managed to secure another job in another government department, working for a senior civil servant. I thought I had arranged with their human resources department that I had flexible working as a carer. But I found out on my first day in the new job that this was not the case. My new boss was a terrible bully and harasser. With tons of inadequacies. By the end of my first day, I had contacted the union and was compiling evidence to put in a grievance.

I couldn’t believe this was happening to me. There I was looking after Mary with her declining illness and then also being bullied in my new employment. Purely because I was a carer to an unwell, elderly lady.

If I arrived five or ten minutes late the boss would have a dreadful hissy fit. It was uncomfortable to watch this person in action. However, I was only there in mind. For some reason I managed to keep my soul and mind elsewhere, so I didn’t really listen to their rantings and if I had to come in later, then I would do, regardless of their awful childish behaviour. I kept in close contact with the union rep who was a very considerate and caring man.

At home, life was getting worse, Mary was going downhill. One morning in January 2016, just a few days after her birthday, she was in the midst of a very bad dementia attack and I suspected another one of her water infections. I phoned 111 and they despatched an ambulance and Mary was taken to hospital. That was the very last time she walked at home.

The hospital confirmed that she was suffering from a water infection (again) and would be kept in hospital for a few days. Once in there Mary contracted MRSA and I was informed that she could not come home. Mary was distraught as her elder sister had died and she wanted to go to the funeral but the hospital would not allow it. Then Mary caught the Norovirus.

I was told by a matron that I would be fined every night if Mary was not discharged on the date of her discharge date. Yet the hospital were the ones not discharging her, not me! When I complained about this I was just registered as a troublemaker.

I looked at Mary’s notes. Someone from Social Services had said that I was snooping and should not be allowed to read Mary’s notes. I was horrified to read this. I think it all stemmed from the fact that Mary had been ready to be discharged from hospital but they couldn’t find adequate care for her, so ended up blaming me all the time because I was fighting like a bully myself for her release.

I don’t think I have met anyone as unpopular with Social Services as I was. Dealing with them was stressful. I had to battle with them because there was only me to make sure Mary had a dignified old age. To be fair the people who actually did come to see Mary from Social Services, were on the whole, nice people, but there was this restricted (rules and regulations) system in place which made it difficult for them to operate as 100% human. And Mary, being Mary, liked them a lot. Because when they visited they were always very kind to her… it was behind the scenes that things were unpleasant.

The hospital closed because of the Norovirus and I was not allowed to visit. I wrote to Mary every day, posting a letter every evening. I wanted her to know that I hadn’t forsaken her and I thought my letters might keep her alive because this illness had taken a dreadful toll on her body. I don’t know whether she ever received the letters, or if she did, if anyone read them to her. But delicate Mary was actually tough, I think it was our joint love for each other which kept Mary going, so slowly she recovered from the Norovirus. I remember walking in to the ward after several weeks of being banned from seeing Mary. She was asleep and looked terribly frail, but when I called her name she opened her eyes and cried because she was so pleased to see me. She thought I had deserted her.

But there was another setback. Doctors decided that Mary had a supposed kidney problem which delayed her discharge even further. As I understand it, Social Services were now being charged for every night Mary was being kept in hospital. So, I assume that was another reason for her non-discharge.

Hurrah, Mary was finally discharged from hospital after nearly four months. She had eventually come home to me. A broken old lady, who could no longer walk, had to have four double handed care visits a day provided by social services, plus more private ones as I still had to work full time, (no flexible working from home for me as a carer when I had the devil incarnate as a boss). Mary was bed ridden upstairs in her bedroom.

I was still trying to do a full day’s work as well and being constantly reprimanded by the boss from hell. My life was a nightmare. Yet I never stopped loving Mary and her love for me was unconditional.

Fortunately, I eventually managed to get transferred from the jaws of Satan to another team where bullying and harassment wasn’t rife, and flexible working and kindness were on offer for me

But Mary was really getting worse. She asked me one day if that was all her life was going to be now, stuck in bed and then she went into a dementia attack and was lost to me. I went into the bathroom and cried. I had tried everything possible to get her walking - £80 physio visits, machinery – everything. All this with virtually no help from Social Services. Instead, they would sneak in while I was out trying to assess whether Mary should be in a care home (because it was cheaper for them). Mary paid an amount for her care but the rest was funded by social services who informed me that Mary’s care cost £50,000 a year and they wanted to change her to a cheaper care agency. Mary was very upset when I told her because she liked the carers from this agency and had favourites.

Then I had a row with the care manager from this care agency. Although the carers were nice they left my kitchen in a mess. But it appears that you are not allowed to say anything negative about them, even when they are in your own home. The outcome of this was that the care agency had the upper hand so Mary was given notice to quit. She was distraught and Social Services began looking for another agency which did double handed calls. But the pressure was on to put Mary in a care home.

Whilst Social Services were trying to find another agency for Mary, I found one myself but it was one that Social Services did not use but I thought that it was a very reasonable price so I asked about Mary having a direct payment. The paperwork had started to go through and the carers had started. Mary liked a couple of them but was not keen on a few others – it seemed to be a strange agency with an even stranger work ethos. The manager behaved more like a used car salesman than a care agency manager.

Anyhow, one evening when I came home from work I found that the back door was not even closed properly, let alone locked. My house backs onto a park and it was worrying to find the house dark with the back door semi open. When the carers came in that evening, I asked who was responsible for leaving the door open. I wasn’t very pleased but I always tried to conduct myself with dignity. The two carers started ranting and raving at me.

Well the crux of the matter was that I was accused of being threatening. I am petite and these two ladies were built like hod carriers. I found it strange that they could accuse me of unreasonable behaviour but that is what they did. And once again Mary was thrown out of this agency after only one week because the carers were frightened to come to my house because of me!

I was distraught. Everyone in that agency was against me, from the manger to the admin staff, not forgetting the carers. For the following week I had to suffer the indignity of the two rough carers coming in the evenings (the ones I had words with) and I kept myself in the lounge while they were in the house but they were childish, slamming doors and making jokes in their loud, rough voices at my expense. I was so pleased when they didn’t come any longer.

I made a formal complaint to their head office, and fortunately they agreed with me, the way I was treated was not correct and they were putting in better training for all concerned. But that still didn’t help me with the care for Mary.

For the following week, I used a private carer and used to assist her with the changing and washing of Mary. She is a nice lady and Mary always loved her. Mary was upset because she knew that I tried my hardest to get good care for her and it was becoming a dreadful struggle for me, working full time and having to look after Mary.

Anyhow, thankfully, Social Services came up with another agency. The carers were all very sweet people, and kind. Some of them did not have a lot of common sense though, which agitated me, so unfortunately, I found myself complaining to the agency. I hated doing it but I think I was on a mission of self-destruction. Once again Mary was threatened with her care service being withdrawn. Luckily, Mary did have some proficient carers who visited her on a daily basis (with the same agency) but experienced and one lady used to be Mary’s carer at a previous agency. So, all in all things were going okay. I had the private carers and a wonderful lady from Mind who used to come and sit with Mary.

But Mary was going downhill, like a not very good skier. She used to get so down because she was bed ridden and I hated seeing her trapped in her bed when she had used to be such a vibrant person with a love of shopping and dog walking. A private carer was also upset because Mary was bedridden and suggested that I get a private assessment from an independent occupational health therapist to come and see if there was any equipment or otherwise which would improve Mary’s quality of life. Because to be honest, I had not been given much help from the Community OH, apart from a lovely lady who managed to get Mary a really nice riser recliner chair, in the days when she could use them.

I pondered over it for a while and then made some enquiries. I actually found a woman who lived near me and she said she would come out and assess Mary and write up a report. The cost was to be approximately £200. She came around to my house one evening a few days later. She really liked Mary and Mary liked her. She was very upset to see that Mary was just bed-bound, day in and day out.

I explained to her that I had enquired about Mary having a hoist in her bedroom but was informed by Social Services’ chief assessor, that the hoist would be too big for the bedroom and that Mary would not like being hoisted. Mary had a riser recliner chair downstairs in the lounge and I was informed that that was too large to get up the stairs so Mary could not be sat in that. This independent OHT examined the chair in the lounge and informed me that the chair came in sections and could easily be dismantled and brought upstairs. Unfortunately, she said that Mary had deteriorated too much now to sit in it. All was not lost, as a special one could be provided with a slight dip in the middle so that Mary could sit in it without fear of falling out. She also mentioned to me that a ceiling hoist could be fitted into the ceiling which would not take up so much room, as Mary’s bedroom was reasonably large and would be able to accommodate it. A surveyor would have to come out and see whether the ceiling was suitable to have such a hoist fitted.

She also mentioned about special turning implements for when she was in bed plus special sheets which could be put on the bed to assist with moving Mary up and down the bed. They were bottom sheets which Mary would lay on. Not the slide sheets which I bought which the carers used. She mentioned other things as well. Mary got excited: she wanted all the things and more which the OT had spoken about.

When the OT had left, I cried alone in the lounge. I felt as if I had failed Mary because she had been trapped in bed for over a year and everything had got worse. She had lost muscle tone and her dementia was getting worse. And no one was really interested in improving Mary’s life except me. Everyone had more or less given up on her. All these health professionals were interested in was that Mary had a “Do Not Resuscitate Order” in place. Which she didn’t have. Because she didn’t want one. She wanted to be saved if she was dying. I was fed up with having to argue with all these people week in week out about it.

Once I had received the report which the private OT sent, I contacted Social Services and emailed them the report but I never heard anything after two weeks so contacted them and the reply was, “Oh yes we have seen that and put it in Mary’s file”.

I was fuming... I wanted them to action it. Not file it away.

I caused a fuss and eventually Social Services said they would arrange for a surveyor to come around to my house to see if the ceiling in Mary’s bedroom would be suitable for the hoist.

I was feeling good and Mary was happy to think that she might be hoisted out of the hospital bed which she called her prison. I was aware that I would have to pay for these things myself, as Social Services always manged to have a get out clause for paying out anything viable. I had to purchase a stair lift myself when Mary was still able bodied, because I was informed that Social Services would not pay for a stairlift when a person had dementia. Her dementia was not bad at the time and Mary enjoyed the freedom it gave her for at least six months.

I didn’t realise at the time, but the hoist would never be needed.

A few weeks later, I noticed that Mary wasn’t well. She wasn’t really with it. She wasn’t speaking much and she was eating like a little bird. I didn’t really want to leave her but I didn’t want to take too much time off work. Although I was in a better working environment, I still didn’t want to abuse flexible working. Memories of working for the monster were still fresh in my mind. When I arrived home, Mary was crying and told me she was having a heart attack. I didn’t think she was but I wanted to play safe. As I never wanted to lose her. She was so special to me. I called 111 and spoke to someone who said they would send an ambulance out.

When the paramedics arrived, they tested Mary and everything was normal, one of the paramedics said that her blood pressure was better than his! That made Mary laugh. I thought that perhaps she had another water infection but they said they didn’t think she did have one but perhaps to phone the GP the next day. The next day Mary was no better, so I phoned the GP who decided not to come and visit her but told me to start giving her antibiotics and double the dose, and if she was no better then she would visit the next day. I tried to give her the antibiotics but she wouldn’t swallow them so eventually I decided to dial 111 again. They said they would send an ambulance. The paramedics said that once again all her stats were okay but because I was worried about her they would take her to hospital. When they were taking her, she woke up and said she didn’t want to go. But I said that she had to go because she wasn’t well.

Every time I sent my mother to hospital something worse happened to her. Why didn’t I remember that? Because this time I was sending her to her death.

At A&E a kind doctor assured me that Mary would be well looked after and that she was being treated for a water infection. She would be staying in overnight. I felt slightly relieved, although Mary was crying; she wanted to be at home with me, not stuck in hospital again. I suppose it could have been the end of Mary, but strangely I didn’t consider that. Mary had always come home from hospital. The next morning, I phoned to see how she was. I was told she was okay and that she had eaten porridge for her breakfast. I was relieved.

I visited Mary after lunch but before tea time. When I arrived, Mary broke my heart. She was lying in a bed just with one sheet on her, and the windows were wide open. She was crying she said she felt cold. I touched her. My old mum felt like a corpse. I asked the nurse for more blankets and they brought a couple more. I cuddled her in close to me; it was like hugging an icy milk bottle. The nurses weren’t that interested. They said that she said that she hadn’t wanted anything to eat for her tea but as she was complaining she was hungry, they gave me some tuna sandwiches. She was ravenous and ate them all and then said she wanted a hot cup of tea…

But then she started groaning loudly and her lovely blue eyes which were normally closed were now wide open like saucers but it looked as if there were no lights on. I managed to find a nurse. She kept telling me how busy she was, but eventually hooked Mary up to a blood pressure monitor. She said that she couldn’t get any reading, that the machine was faulty. She called another nurse and they tried to find a machine which was working. After two more messy attempts they managed to find one which worked. But it was giving an extremely low reading of Mary’s blood pressure, about 50 over some other figure which I can’t remember. Which is why they were unable to get a reading – it was because her blood pressure was so low. Anyhow, although I thought that Mary was dead, she did in fact, close her eyes and moan gently. I was so grateful; my old mum was still alive. At that very moment, I realised that I loved her more than I could imagine.

A lady doctor came to see her and I helped turn her over so that the doctor could put the stethoscope on her back, her blood pressure went up to 90 but the doctor said that was probably because we had been turning her. The doctor told me that Mary had a very bad infection but that she was being treated with very strong antibiotics. Two health assistants came to change Mary’s incontinent pad. I had brought her own with me and gave to them because they were strong and soft, not like the hospital ones. Mary was sleeping and it was getting late and I was tired. Looking after Mary made me very tired. I looked back at Mary, she had a beautiful face, perfect skin and line free and she was sleeping. I felt so proud that she was my mother.

I slept well that night. I hoped that Mary had improved by the time I got to the hospital. I hoped that I would be able to go to work the following day. Although I was no longer being bullied at work, I just wanted to put in a few substantial days’ work. To prove that I was a good worker unlike what had previously been said about me.

The next morning, I woke up at about 8am. Why did I wake up? Because I heard Mary crying. I was just getting myself composed, ready to get out of bed and rush into see her. I assumed it was her feet that were aching, when I realised that Mary wasn’t at home, she was at hospital.

Immediately the hospital phoned. Mary was dead.

I felt like a bomb had gone off in my head. I wanted to pass out but I couldn’t. I wasn’t really focussing on the nurse. She was crying and said that they had checked on Mary earlier in the morning and she was fine. Apparently, they went back to check on her later and she was dead.

I had always promised Mary that she wouldn’t die alone. In the end I failed her. I feel full of guilt and ashamed and those feelings will haunt me until my own death. A terrible burden for me to bear. They checked on her… and when they went back she was dead. No one had held her hand. No one had told her they loved her. Her life left her in a spartan hospital bed and I was nowhere to be seen. I had gone over in my mind, many times how I would deal with Mary’s death. I would hold her and cuddle her and tell her that she had won the Euromillions. Winning the lottery was always a dream of hers. And near to her death I wanted her to imagine that the dream had come true.

I was desperate to see Mary. I urgently needed the last goodbye.

My neighbour said she would take me to the hospital so that I could see Mary. She would drive. I was so grateful because I don’t think I had the physical or mental strength to drive myself. At the hospital we went to the ward that Mary was in. They told me, as if I already knew, that Mary had been moved. It made me cry, couldn’t the hospital get anything right.

We trundled upstairs and there were two male nurses waiting, offering me sympathy. I couldn’t stomach it. We had to wait before we were shown Mary, who knows what they were doing. I looked and saw Mary lying in the bed, and I wanted to get into the bed with her. Like when I was young and she had comforted me. And in her death, I wanted to comfort her.

She looked beautiful, like a little doll fast asleep. She looked so peaceful. Although there was an ugly bruise on the left-hand side of her neck.

I kissed her and held her and she was so cold. My neighbour kissed her and held her as well. She left the room so that I could be with her in private. I cried so much. But Mary didn’t notice. Although several times I thought I saw her breathing but that was, I hope, just a trick of the light.

A nurse gave me scissors and I cut off a lock of her hair.

I wished I had stayed with Mary for longer, but always the coward. I left. Perhaps I should have stayed. But I still have, in my mind’s eye, how beautiful and serene she looked. It will never fade from my memory.

I had an appointment to register the death the following day at the hospital and I also spoke to the doctor who certified Mary’s death. I was given the cause of death, it was sepsis. I was numb. I asked the doctor why Mary died and she said that her heart must have given out because of trying to fight the infection. I asked what the cause of the large bruise was on her neck and she said she had seen her twice but hadn’t noticed any large bruise.

I had no more questions at the time. I was too bruised myself.

I took my forms and went onto the undertaker. At last I had found someone kind. While I was there arranging Mary’s funeral they managed to collect her body. But I never saw her at the undertakers, I never wanted to. I had the memory of her, the smell of her, and the touch of her deep in my heart.

The cremation service was lovely, just as Mary would have wanted. It was June and the weather was fine. Although I couldn’t relate to the person in the coffin being my mother. But I knew that she was wearing her favourite sparkly purple nightdress. And she had a best pair of knickers on – lace edged – not those hideous mesh knickers with marquee-size incontinent pads that she had endured the last two years of her life.

I set free – two doves – one signifying her of course, and the other my father. Joined at last. The sun was bright and there was a gentle wind as the doves soared in the sky.

Afterwards, it was back to my house and it was a blur. I just wanted everyone to go. A kind friend helped me with the washing up and then I lay down on my sofa with the windows open in the lounge and fell asleep. I didn’t wake up until after 10pm. But I was alone. There was no Mary shouting at me to massage her feet and hold her when she felt pain. She had gone… well from this world anyway.

And what is my life now? Mary has set me free from the burden of looking after her. But perhaps it is a freedom I don’t want. I can work full time now without anyone screaming at me that I am late.

I am now like everyone else; I can get to work by 9am.

I can go on holiday whenever I like.

A friend bought me an Amazon Echo to give me companionship as I am now on my own. But Alexa can’t compete with Mary. Perhaps if she had Mary’s voice that would comfort me.

Romantic love which was always around my life, withdrew to another place a long time ago.

The retirement to the sun, set and won’t rise again. I will stay in the house where I cared for Mary.

But there is no Mary any more.

***

Yet writing this has ignited the healing process but I still have dark days. Mary has now been dead over a year. I have sat with her death over the dark winter months and now I can feel, hear and smell July. She would have loved the garden and seeing the summer flowers. She would have enjoyed watching the birds feeding.

I still haven’t received a response, which is over a year now, to some questions I decided I did have about Mary’s death after I had received her medical notes. I have asked if the Parliamentary Health Ombudsman can help me. But that is further delaying giving me peace of mind and I can’t move on.

I contemplated joining the Walk for Memory arranged by the Alzheimer’s Society. But, how can I? As part of her inclusive Parkinson’s “package”, Mary’s dementia was Lewy Body. She never once forgot who I was. And that makes me sad.

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